A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting

Abstract

Despite the clear need for post-diagnostic parent/carer education and training in autism spectrum disorder, the evidence base is small, particularly in low-resource settings. Furthermore, few studies have examined the feasibility of intervention implementation. Here, we performed a comparative feasibility study of two Parent Education and Training programmes in a low-resource South African setting. EarlyBird/EarlyBird Plus, a UK-developed programme was compared to Autism Cares, a locally developed programme. The aims were to (1) examine acceptability, adaptation and perform limited efficacy testing and (2) use a multi-stakeholder panel and new autism spectrum disorder Parent Education and Training evaluation framework checklist to compare the programmes. A mixed-method, quasi-experimental design collected pre, post and 3-month follow-up data. Measures included standardised and custom-designed quantitative and qualitative data. In total, 18 parents participated in the EarlyBird/EarlyBird Plus programmes and 11 in Autism Cares. Strong parental acceptability for both programmes was found and adaptation suggestions were provided. Limited efficacy testing showed positive changes for parental stress, knowledge of autism spectrum disorder and child changes. The multi-stakeholder panel rated EarlyBird/EarlyBird Plus superior for next-step research based on implementation feasibility. Our findings contribute to the limited evidence base for autism spectrum disorder Parent Education and Training in low-resource environments and underline the need for evidence base of programmes to include not only intervention outcomes but also procedural and implementation outcomes.

Lay Abstract

After a diagnosis of autism, it is an important first step to give families information about autism and skills to help them support their child. These interventions are called Parent Education and Training programmes. Little is known about these programmes or if they can make a difference to families, particularly in countries with few autism resources. In this study, we compared two Parent Education and Training programmes in South Africa. EarlyBird/EarlyBird Plus was developed in the United Kingdom, and Autism Cares in South Africa. We wanted to know if parents found the programmes useful, and if any changes were required. We collected information from parents through questionnaires and interviews before and after the group. We also asked a panel of experts (including parents) to compare the programmes. In total, 18 parents attended the EarlyBird/EarlyBird Plus group and 11 attended the Autism Cares group. Parents found both programmes helpful and made suggestions for improvements. Parents showed less stress, more knowledge of autism, and saw improvements in their children. The expert panel rated EarlyBird/EarlyBird Plus as better because it was more supportive of parents and was seen as easier to run in the country. Our study showed that Parent Education and Training programmes are important, but that researchers must study not only the outcomes but also the implementation needs of these programmes.

Keywords

autism evaluation framework implementation outcomes intervention outcomes low-resource environments parent education parent training

Introduction

Autism spectrum disorder (ASD) has clearly been recognised as a global public health concern. The World Health Organization (WHO) resolution on ASD and related developmental disabilities (WHO, 2014) expressed deep concern about the fact that ‘children and families in need, particularly in low-resource contexts, often have poor access to appropriate supports and services’ (p. 2). The WHO resolution placed a strong emphasis on families and communities and expressly recommended the need to provide social and psychological support and care to families affected by ASD. It also highlighted the need for context-specific research on the public health and service delivery aspects of ASD (WHO, 2014).

The focus on families and communities as well as the need for education and support to families has been highlighted in the ASD literature (Bearss et al., 2015; Gillespie-Lynch & Brezis, 2017) and reinforces the need for support and psychoeducation directly after diagnosis (Dawson-Squibb et al., 2020). Various definitions have been used to describe the range of parent/carer-related interventions for ASD. The most well-defined taxonomy to date was articulated by Bearss and colleagues (2015) who differentiated between ‘parent support’ (to describe interventions where the parent was the direct beneficiary) and ‘parent-mediated intervention’ (to describe parent-led interventions where the child with ASD was the direct beneficiary). In a review of one specific ASD parent programme (Dawson-Squibb et al., 2019), it was acknowledged that many parent support interventions may represent ‘hybrids’ between these broad groups as outlined by Bearss et al. (2015). The authors recommended use of a placeholder term – Parent Education and Training (PET) – to describe the process of passing on information or skills to parents/carers using a range of modalities (e.g. didactic, role-play, discussions) in a context where parents/carers and trained facilitators are the direct participants. As noted, the focus of PET is on knowledge transfer to parents/carers and they are the main beneficiaries rather than the emphasis being on the parent–child dyad (Dawson-Squibb et al., 2019; Dawson-Squibb et al., 2020).

A wide range of PET programmes are used across the globe (see Dawson-Squibb et al., 2020, for a recent review). In a scoping review of one such widely implemented PET programme, the EarlyBird/EarlyBird Plus (EB/EBP) programme developed in the United Kingdom, the authors were able to identify only low level of evidence for the outcomes of the programme and found that little research to date had been performed on implementation-related factors of the programme, such as expansion, practicality, accessibility and cultural appropriateness (Dawson-Squibb et al., 2019). A recently published review by the National Clearinghouse on autism evidence and practice identified only two parent-mediated interventions as evidence based, despite the many programmes that exist (Steinbrenner et al., 2020). This further supports that argument that more research on parent-focused programmes is required. A broader scoping review of all PET programmes conducted outside the United States to date (Dawson-Squibb et al., 2020) identified 37 publications on 34 unique PET programmes. Findings were very similar to the EB/EBP results, with only five randomised controlled trials ever performed and limited implementation science investigation of these PET programmes (Dawson-Squibb et al., 2020). The authors commented on the absence of any consensus evaluation tools to make direct comparisons of programmes in order to evaluate or select a suitable PET programme for a specific context. Dawson-Squibb and de Vries (2019) therefore used a multi-stakeholder participatory strategy to generate a pragmatic evaluation framework as a potential tool for the study of ASD PET programmes (Dawson-Squibb & de Vries, 2019).

Given the current state of PET research, particularly in low-resource environments where PET may be especially empowering to families, we set out to perform a head-to-head comparison of two PET programmes with low-resourced families in South Africa, where little research on ASD has been performed to date (de Vries, 2016; Franz et al., 2017).

Two PET programmes under investigation

We selected two PET programmes for examination and comparison in this study. EB/EBP was designed in 1997 and 2003, respectively, by the UK National Autistic Society. The primary aims of EB/EBP are (1) to support parents immediately after diagnosis, (2) to empower parents and encourage a positive perception of the child’s ASD, and (3) to help parents establish good practice. To date, more than 27,000 families in 14 countries have attended the 12-week group-based programmes. The majority of research on EB/EBP reported positive outcomes, although the evidence base comprised mostly lower-level strength and was exclusively from high-income countries (HICs) (Dawson-Squibb et al., 2019; Palmer et al., 2020).

EB and EBP are broadly similar in structure, aim, format and content. EB was designed for parent/carers of preschool children shortly after diagnosis. EBP was designed for parents/carers of schoolgoing children under the age of 9 years. Apart from age, the other difference is that families attending EBP can invite a professional who works with the child (e.g. teacher or classroom assistant) to attend the course with the parents/carers. A maximum of six families (two carers per child) can attend the EB/EBP programmes at a time. Each group session lasts 2.5 h and is closely structured, following the training manual protocol. After a pre-programme information meeting describing what EB/EBP is, parents can agree to participate, and a home visit is conducted. The content and structure of EB/EBP are based on a number of theoretical models and use a range of teaching methods including didactic, parent manual (given to each family), home visits, group discussions and role-plays (Shields & Simpson, 2004). While there are therefore some differences between the programmes, the content and structure of both are very similar. For the purposes of this feasibility study, we therefore opted to group them as one PET programme.

Autism Cares is a 5-day psychoeducation workshop for parents and professionals run through Autism Western Cape (AWC) in South Africa. AWC is a non-profit organisation that aims to provide information as well as advisory, advocacy and support services to those in the Western Cape affected by ASD. The Autism Cares programme was developed by AWC in an attempt to provide information about ASD and ASD services in Cape Town and the Western Cape in order to meet the needs of parents and professionals. The programme is run over five consecutive days, 6 h per day (in total, 30 active hours, which is broadly similar to the EB/EBP programme). Each day covers a different module: (1) Understanding ASD, (2) Behaviour Management, (3) Early Learner Therapy, (4) ASD and inclusion in education, and concludes with a visit to an ASD centre where parents and professionals can interact with children with ASD and observe relevant strategies being implemented, on day 5.

Information and content for Autism Cares was gathered from a variety of sources and was adapted at the discretion of the course presenter, based on feedback from groups. No single theoretical model provides a foundation for Autism Cares, but a range of widely used models and approaches are included (e.g. PECS, ABA, TEACCH) (Bondy & Frost, 1994; Division TEACCH, 2002; Foxx, 2008). The programme is aimed at both professionals and parents. A maximum of 12 people may attend each group with one facilitator presenting the material. It is not aimed at any particular age group of children with ASD. The teaching format includes a didactic approach, videos and some group discussion. Additional reading materials and worksheets are provided for participants. No home visits are included as part of the programme. The programme is currently run only in Cape Town. To date, no formal research or evaluation has been performed on Autism Cares. The programme therefore has no existing evidence base and no outcome measures have been included in the programme.

Table 1 provides a summary of the two programmes, while Table 2 outlines some of the similarities and differences between these two programmes.

Table 1.

Description of EarlyBird/EarlyBird Plus and Autism Cares.

	EB and EBP	Autism Cares
Developed by	National Autistic Society, UK	Autism Western Cape, South Africa
Year of development	1997 (EB), 2003 (EBP)	2014
Aims	(1) To support parents immediately after diagnosis (2) To empower parents and encourage a positive perception of their child’s ASD (3) To help parents establish good practice	To provide parents and professionals with information regarding ASD
Target population	Parents of children recently diagnosed with ASD EB – preschool children EBP – schoolgoing children up to 8 years 11 months	Parents and professionals wanting to learn more about ASD
Course length	2.5 h per week for 12 weeks Total = 30 h	6 h per day for five consecutive days Total = 30 h
Facilitators and training	Two trained and licenced facilitators per programme	One facilitator per programme, no current programme to train facilitators
Participants per group	EB – six families (two individuals per family) EBP – five families plus one professional per family (selected by the parents, e.g. classroom assistant)	Up to 12 participants can attend per group (mixture of parents and professionals)
Number of countries delivering programme	14	1
How many have attended	27,000+ families	Not documented

EB: EarlyBird; EBP: EarlyBird Plus; ASD: autism spectrum disorder.

Table 2.

Comparison of EarlyBird/EarlyBird Plus and Autism Cares.

	EarlyBird and EarlyBird Plus	Autism Cares
Similarities
Overall focus	Overall focus on support, education and upskilling of parents through group work	Overall focus on education and upskilling of parents and professionals through group work
	Focus on ASD	Focus on ASD
	Focus on behaviour, communication and socialisation	Focus on behaviour, communication and socialisation
Differences
Length	Weekly group sessions with 3-month time commitment	Five consecutive days, 6 h per day
PET components	In addition to psychoeducation, focus on support and upskilling of parents as well as stress reduction	Main aim to impart information to parents and professionals
Modalities of delivery	Didactic presentation and teaching, group activities, large and small group discussion, video vignettes, parent book, homework tasks, home visits	Didactic presentation, group work, video vignettes and handouts/reading material, visit to an ASD centre
Research evidence base	Lower strength evidence from HIC indicating strong acceptability and efficacy	No previous or formal research on the programme’s efficacy
Training	Costly facilitator training only available in the United Kingdom through NAS	No model or structure for facilitator training
Manualisation	Well-established protocol and course content, including facilitator manual and parent handbook	Adaptable protocol, not currently manualised
Awareness of culture diversity in programmes	Programme originally designed for a UK population with little overt emphasis on cultural appropriateness for other countries	Programme specifically designed for local population in Cape Town, South Africa
Monitoring and fidelity	Programme run internationally with regular feedback and central monitoring of facilitators through well-established parent questionnaires ensuring quality and fidelity	No established system for fidelity of facilitators. Limited parent feedback monitored by course facilitator
Proprietary concerns	The clearly structured and manualised programme material and training is provided by the NAS based in the United Kingdom. They have copyright of the material. Any adaptations or changes to the programme are done only with their permission	Programme and material designed for local population is non-proprietary and adapted as required

ASD: autism spectrum disorder; PET: Parent Education and Training; HIC: high-income countries; NAS: National Autistic Society.

As described by Damschroder et al. (2009), implementation science is designed as a method of enquiry to support investigators in determining whether interventions can be implemented in real-world settings. These settings may differ in many ways from the original settings the interventions were intended (Damschroder et al., 2009). Traditionally, research on PET has focused primarily on intervention outcome data, considered necessary for scientific progress (Dawson-Squibb et al., 2019). Implementation science proposes that additional information is required, including an emphasis on feasibility, acceptability, appropriateness and adaptation (Bowen et al., 2009; Schlebusch et al., 2020). Focusing on ASD interventions in low-resource settings, Schlebusch et al. (2020) underlined the importance of examining implementation outcomes in addition to intervention outcomes.

We set out to do a comparative feasibility study with two goals. First, using the feasibility framework of Bowen et al. (2009), we opted to use a mixed-methods examination of the two programmes as our primary goal with emphasis on acceptability, adaptation and limited efficacy testing. Our secondary goal was to use the recently published multi-stakeholder evaluation framework checklist of Dawson-Squibb and de Vries (2019) to perform a head-to-head comparison of the two programmes. The evaluation framework checklist, designed for PET programmes, has three main domains (‘Outcomes’, Processes & Procedures and ‘Implementation Landscape’) (Dawson-Squibb & de Vries, 2019). We therefore selected the framework given that it allowed us to evaluate both intervention and implementation outcomes of the PET programmes under investigation.

We predicted that both programmes would show some degree of parent/carer acceptability and, based on previous EB/EBP research, some positive outcomes. It was predicted that there would be some adaptations required regarding the programmes in this low- and middle-income country (LMIC) and culturally diverse setting, particularly in relation to language and local services. In terms of overall comparative feasibility, we predicted that EB/EBP would be superior to AC given (1) its stronger theoretical foundation, (2) the wider implementation and existing evidence base and (3) given that that EB/EBP was explicitly designed not only to share information about autism (e.g. what it is, what it means, resources, techniques) but also to provide psychological support to parents/caregivers (e.g. emotional support, facilitating supportive discussions, actively connecting families).

Methods

Study design

The study incorporated a mixed-methods design, collecting both qualitative and quantitative data. To examine feasibility, we specifically investigated acceptability, adaptation and limited efficacy testing regarded as appropriate focus areas for such studies (Bowen et al., 2009). As defined by Bowen and colleagues (2009), acceptability is regarded as how the intended individual recipients react to the intervention. Adaptation describes what changes to programme procedures or content may be required to make it appropriate in a new situation. Limited efficacy testing may be conducted with shorter follow-up periods and with convenience samples or with limited statistical power (Bowen et al., 2009). We opted for a quasi-experimental pre–post design with data collection at baseline, throughout the programmes, on conclusion, and 3 months after conclusion. After analysis of PET findings, a multi-stakeholder panel was convened to generate a consensus head-to-head comparison of the two programmes using the multi-stakeholder evaluation framework checklist generated by Dawson-Squibb and de Vries (2019).

Participants

Parents/carers

Convenience sampling was employed and the standard EB/EBP procedures were used for recruitment of EB/EBP and Autism Cares participants using a consolidated ASD waiting list held by the Department of Education in the Western Cape. Participants were assigned to programmes sequentially rather than randomly. Inclusion criteria for parents in the study were as follows: (1) having a child with an existing clinical diagnosis of ASD, (2) parents had to be interested, willing and able to attend the programmes, (3) parents/carers had to have a sufficient mastery of English to participate, and (4) provided written, informed consent.

Multi-stakeholder panel

A group of multi-stakeholders from a range of disciplines and organisations were invited to participate in the programme evaluation phase. All stakeholders who had previously been involved in the generation of the evaluation checklist (Dawson-Squibb & de Vries, 2019) were invited. We aimed to have a review panel with five or more members. As outlined by Dawson-Squibb and de Vries (2019), stakeholders were recruited using purposive sampling. The authors sought to identify individuals with expertise in clinical aspects of ASD (speech and language, occupational therapy, psychiatry, psychology), education of ASD, social care and in health systems research and implementation science. Stakeholders with expertise in low-resource settings were prioritised and were selected to ensure broad representation across Education, Health, Social Development, Academic and non-profit sectors. Parents/carers of individuals with ASD were also included as key stakeholders.

Research procedures and data collection

After completing standard training in the United Kingdom, the two facilitators for EB/EBP (the first author (J-J.D-S.) and a colleague from AWC) were licenced as EB/EBP facilitators. They therefore ran the EB/EBP programme. The same colleague from AWC developed the AC programme and acted as facilitator.

Following recruitment and consent, participants completed pre-programme questionnaires and individual interviews. The EB programme was run from April to July 2016 and EBP from July to October 2016. Two Autism Cares courses were run in September and October 2016. Participants completed post-programme questionnaires and individual interviews within 3 weeks of programme participation. The EB/EBP post-interviews were completed by an independent interviewer who was not a facilitator of either of the programmes (given the first author was a facilitator this was done to prevent bias). The Autism Cares post-interviews and 3-month follow-up questionnaires and interviews with participants were completed by the first author. Following completion of the programmes, the first author presented both quantitative and qualitative data to the multi-stakeholder panel over two half-day meetings (see Supplementary Table 1), where the multi-stakeholder panel, who was not involved in any of the programmes, was asked to complete the evaluation framework checklist individually. Following this, there was group discussion and consensus was reached on variables as outlined in the PET evaluation framework checklist. As described by Dawson-Squibb and de Vries (2019), the checklist was developed to be a memory aid for review/decision-making and was not designed as a questionnaire with specific scores and cut-off values. The multi-stakeholder team therefore worked towards consensus ratings of ‘Yes’, ‘No’ or ‘More evidence required’ on all checklist items and concluded with a brief narrative consensus statement about each programme.

Measures

A combination of standardised and customised measures were used. Where researchers were required to choose between measures (e.g. selecting between multiple instruments measuring parental stress) preference was given to those that (1) had been previously used in PET studies, (2) could be meaningfully completed by participants in LMIC and (3) were available to researchers. The measures chosen are outlined below.

Demographic questionnaire

This questionnaire captured standard demographic information including age, gender, marital status, household income and location. A social support question, drawn from Myer et al. (2008), was also included in the questionnaire.

The Parenting Stress Index – short form

This widely used questionnaire was developed to identify stressed or dysfunctional parent–child systems and facilitate intervention before the development of behavioural and emotional problems (Abidin, 1995). The short form is made up of 36 items with three subscales: Parental Distress (PD), Parent–Child Dysfunction (PCDI) and Difficult Child (DC). The three subscales consist of 12 items and the combined score of the three subscales contribute to a Total Stress Score which is determined as a percentile. A high score on each scale indicates a high level of stress. The short form uses a 5-point Likert-type scale. This measure is widely used across a range of research and clinical spheres, including previous research on the EB/EBP programmes making it a suitable instrument for this research.

Semi-structured interview questions

The pre- and post-semi-structured interview (SSI) questions covered a broad range of areas to give participants the opportunity to comment both on their experience and on the feasibility of the programme they attended. The pre-programme interview explored parents’ current concerns, expectations for the course and access to support. The post-interview asked parents about their experiences, perceived outcomes and acceptability, to suggest changes or additions they would make to the programme, and how it has changed their day-to-day interactions with their child. The questions were used as a guide during the interview to elicit themes from parents. Regardless of which programme families attended (EB/EBP or Autism Cares), all participants were asked the same questions during pre- and post-SSI.

Parent programme satisfaction measure

This questionnaire was custom-designed for the purposes of this feasibility study and covered areas pertinent to the specific parenting programmes examined. The questions included a combination of 7-point Likert-type scale measures and qualitative questions and covered four broad domains, including the overall group, the teaching format, the facilitators and group participants. The 17 questions were identical for both the EB/EBP and Autism Cares groups. EB/EBP had two additional questions under the Teaching Format section. These asked about the Home Visits and Parent Book, which were only applicable to EB/EBP (the Autism Cares programme did not have home visits and did not provide a Parent Book).

Parent Involvement Questionnaire – knowledge of ASD section

This questionnaire was designed to explore parent involvement in Intensive Behaviour Intervention for ASD (IBI) (Solish & Perry, 2008). The parent self-report questionnaire included 96 questions covering five independent variables including parental self-efficacy, knowledge of ASD, belief about IBI, perception of child progress and stress. For the purposes of our study, only the ‘knowledge about ASD’ section was used to evaluate changes in parental knowledge of ASD. This section consisted of 10 questions where parents marked True, False or Don’t Know to statements about ASD. The questionnaire evaluates different types of ASD knowledge specifically focusing on prevalence and symptoms. A higher score suggested a better knowledge of ASD. Previous research on this questionnaire has indicated significant correlation between parental involvement and scores on the knowledge, belief and self-efficacy sections suggesting it could measure relevant change in a reliable way (Solish & Perry, 2008). The questionnaires simple format further made it an appropriate choice for the study population.

Autism Treatment Evaluation Checklist

This questionnaire was developed to measure changes in response to treatment (Rimland & Edelson, 1999). The Autism Treatment Evaluation Checklist (ATEC) is a 77-item questionnaire that can be completed by parents, teachers and carers. It includes four subtests: (1) Speech/Language communication (14 items), (2) Sociability (20 items), (3) Sensory/cognitive awareness (18 items) and (4) Health/Physical/Behaviour (25 items). Total scores range from 0 to 180 with a higher score generally indicating a greater degree of impairment. We used the Total scores as the measure of child changes in this study. The ATEC has been reported to be reliable, valid and significantly correlated to the Childhood Autism Rating Scale and has been used in a range of studies to assess change (Geier et al., 2013; Schopler et al., 1980).

ASD PET evaluation framework checklist

Given the absence of any tools to evaluate or compare ASD PET programmes at the time, the PET evaluation framework checklist was developed by Dawson-Squibb and de Vries (2019) as a pragmatic ‘aide memoire’ (memory aid) for this purpose. The authors used a multi-stakeholder participatory implementation science approach to generate key domains of importance when providers or funders might need to select or review a potential PET programme. The multi-stakeholder process identified three main domains (‘Outcomes’, ‘Processes & Procedures’ and ‘Implementation Landscape’), each with a number of components and criteria. From the multi-stakeholder results, the authors generated the evaluation framework checklist that includes 37 questions across the three domains. The authors proposed that providers/funders could use the checklist to collect relevant data that would allow them to decide whether each item had sufficient evidence to respond ‘Yes’, ‘No’ or ‘More evidence required’. The checklist also includes space for qualitative comments to each item. The authors proposed that the checklist could be used by individuals or in groups using a consensus approach. Given that the checklist was designed as a memory aid, it does not include any specific scores or cut-off values; rather, results are examined qualitatively.

Data analysis

Data were analysed under the three main headings of interest – acceptability, adaptation and limited efficacy testing. Supplementary Table 2 shows a summary of data used under each heading.

All quantitative data gathered from the pre- and post-questionnaires were scored as pre-specified by individual measures and entered for descriptive pre–post analysis. Measures designed for this study were entered for descriptive analysis. Given the small sample size in EB and EBP, data were combined for the two programmes. Given that this was a comparative feasibility study, we did not perform any inferential statistics.

Qualitative data from the pre- and post-SSIs were audio recorded for verbatim transcription and thematic analysis, using the six-step process outlined by Braun and Clarke (2006). These six phases were (1) familiarising with the data, (2) generating initial codes, (3) searching for themes, (4) reviewing themes, (5) defining and naming themes and (6) producing the report. NVivo (2016) software was used to facilitate this thematic analysis.

The multi-stakeholder panel was given access to all data, and discussions continued on each theme and component until consensus was reached. Where consensus could not be reached due to a lack of data, this was indicated.

Results

Participant demographics and attendance

Eleven families participated in the EB/EBP programme (5 for EB and 6 for EBP), consisting of 23 individuals in total. For research purposes only main carers were asked to complete the questionnaires, which resulted in a total of 18 completed data sets (EB = 11; EBP = 7). ‘Main carers’ were defined as those permanently residing with the child and who were responsible for caring and supervising the child in their daily life. Other individuals, for example, aunts, uncles, siblings, grandparents, may have attended some of the group sessions but did not complete the questionnaires. A child could have more than one main carer (e.g. mother and father). For the AC programmes, 10 families were included, and of those 11 parents attended the programme and completed the questionnaires. The ages of children with ASD in the families ranged from 3 years 1 months to 7 years 4 months for EB/EBP, and 3 years 1 month to 8 years 11 months for Autism Cares.

The socio-demographic characteristics of families were broadly similar in terms of male/female ratio, age, language, self-assigned race, household income and child’s age. These are detailed in Table 3.

Table 3.

Demographics of participants.

	EarlyBird/EarlyBird Plus	Autism Cares
Number of participants	18	11
Families	11	10
Male/Female	28% male 72% female	9% male 91% female
Age	18% – 29 years; 28% 30+ years; 72%	18% – 29 years; 27% 30+ years; 73%
Language	English; 67% Xhosa; 11% Afrikaans; 6% Bilingual; 6% Other; 11%	English; 45% Xhosa; 27% Afrikaans; 9% Bilingual; 18%
Self-assigned race	Coloured; 61% Black; 22% White; 17%	Coloured; 55% Black; 27% White; 18%
Monthly household income	ZAR^a 0% – 5000; 39% ZAR 5000 – 25,000; 56% ZAR 25,000 – 100,000; 6%	ZAR 0% – 5000; 36% ZAR 5000 – 25,000; 56% ZAR 25,000 – 100,000; 9%
Age of child with ASD	3 years 1 month – 7 years 4 months	3 years 1 month – 8 years 11 months

ASD: autism spectrum disorder.

ZAR 5000 ~ US$400/GBP 300.

The average family attendance for the EB/EBP sessions was 91%. Six of the families attended 100% of the sessions (8 out of 8). The average family attendance for the AC sessions was 89%. Seven of the families attended 100% of the sessions (5 out of 5).

Feasibility findings

Acceptability

Post-programme parent satisfaction measure

We present results for both PET programmes on (1) modalities and components of the programme, (2) whether participants would recommend it to others and (3) overall satisfaction with the programme, group and facilitators.

For EB/EBP all respondents (18/18, 100%) rated the content, video vignettes and reading materials as ‘useful’ or ‘extremely useful’. The majority of participants (15/18, 83.3%) rated group discussions, home practice and home visits also as ‘useful’ or ‘extremely useful’, with a handful of reports (3/18, 16.6%) indicating that it was ‘somewhat helpful’ or ‘neither helpful nor unhelpful’. No negative EB/EBP responses were given. Results are summarised in Figure 1.

Figure 1.

Post-programme satisfaction questionnaire results. Panel (a) shows findings for the EarlyBird/EarlyBird Plus programme and panel (b) for the Autism Cares programme.

For Autism Cares, the majority (9/11, 81.8%) of respondents rated group discussions, practice at home and reading materials as ‘useful’ or ‘extremely useful’. A small number (2/11, 18.1%) found the group discussion and home practice ‘somewhat useful’. No Autism Cares responses were negative. Results are shown in Figure 1.

All participants said that they would either ‘strongly recommend’ or ‘recommend’ the programme they participated in to a friend or relative. Of the 18 participants (72.2%), 13 said they would ‘strongly recommend’ EB/EBP to a friend/relative and five (27.8%) would ‘recommend’ it. Of the 11 Autism Cares participants, 10 (90.9%) said they would ‘strongly recommend’ it to a friend/relative and 1 (9.1%) would ‘recommend’ it.

Of the 18 participants, 14 (77.8%) reported their overall impression of the EB/EBP group as being ‘very positive’ and 4 (22.2%) were ‘positive’. Thirteen (72.2%) felt the group was ‘very supportive’ and five (27.8%) found it ‘supportive’. Thirteen (72.2%) found the facilitators ‘very helpful’ and five (27.8%) found them ‘helpful’. Eight (72.7%) of the participants reported their overall impression of the Autism Cares group as being ‘very positive’ and three (27.2%) were ‘positive’. Eight (72.7%) felt the group was ‘very supportive’ and three (27.2%) found it ‘supportive’. Ten (90.9%) found the facilitator ‘very helpful’ and one (9.1%) reported the facilitator as being ‘helpful’. Results are shown in Figure 2.

Figure 2.

EarlyBird/EarlyBird Plus and Autism Cares post-programme reports. Panel (a) shows findings for EarlyBIrd/EarlyBirdPlus, and panel (b) shows findings for Autism Cares.

SSI themes

Five themes from the SSIs related to acceptability of EB/EBP and Autism Cares.

Theme 1: PET as helpful, relevant and appropriate

EB/EBP

In 10 of the 11 (91%) interviews, parents specifically noted that the programme had met their needs. Of the 10, 4 spontaneously remarked that it had exceeded their expectations or needs. All of the parents noted, often in effusive language, that they found the EB/EBP helpful, relevant and appropriate. The quote below from one of the interviews reflects an example of the impact the participants felt the programme had on them:

Everything that we know about autism is thanks to the EarlyBird Programme. Remember, we went in this blind . . . but now we can see. (PRN13)

None of the interviewees commented that the programme was not helpful or not relevant.

Autism Cares

Of the 10 interviewees, 8 (80%) commented that the programme met their needs and expectations. Three of those spontaneously reported that it exceeded their expectations. Participants in all 10 of the interviews indicated that they found the programme helpful, relevant and appropriate. A representative quote from one parent illustrates the following point:

Yes, definitely it was. It was appropriate because it could give information that . . . we were wondering about, . . . like why is he doing certain things at certain times, so it was very informative, it was appropriate. (PRN27)

Five respondents commented that some of the information in the programme was not always relevant. One parent reported that some of the information was relevant to professionals rather than parents. Another parent reported that the information relating to Individual Education Plans was not applicable to her child (who was not yet attending school). The mother and father of another child reported that the information on toilet training was not relevant to their needs, and one parent reported that some of the information regarding toilet training could not be used because of her home environment where the toilet was outside.

Theme 2: PET in a South African context

EB/EBP

In 6 of the 11 interviews (55%), it was reflected that this kind of programme is needed in South Africa (‘We need it badly, so badly’, PRN15). In five of the interviews, it was specifically reported that the programme was culturally acceptable in a South African context. None of the parents reported that any parts of the course were not acceptable. A parent (comment below) reported on her thoughts regarding the programme in a South African context:

I don’t know where else would you go for something like this . . . we’ve taken him since he was diagnosed . . . all around the Western Cape, to so many people and places. But it’s a bit here and a bit there . . . with EarlyBird, you’re getting this whole package, where they’re pulling things together, explaining why. With support groups, every month they would have a different topic, but it’s like the big elephant, you know, now it’s the head and now it’s the foot and now it’s the tail. But with this EarlyBird Program, it’s a sort of a package. (PRN11)

Autism Cares

In 9 of the 10 interviews (90%), parents commented that the programme was needed in South Africa. The topic of cultural diversity was raised in four of the interviews. Reflecting on the different cultural backgrounds of participants in the group, one commented,

I found it quite fine. I think we all got along and I think autism kind of brings us together because we are all in the same situation . . . and I think we just want the best for our children. And we said being in South Africa there’s not much support that you can get. (PRN25)

Theme 3: Acceptability of the content, parent book, transport, time/length and facilitators

EB/EBP

All parents commented that the content, parent book and facilitators were acceptable. The parent book was rated highly by many of the parents as reflected in this exchange when a mother and father were asked what they thought of the book:

Perfect.

Ah, this is like, not leaving the house at all.

Ja . . . that’s our autism bible. (PRN1 and PRN02)

Parents also reflected positively on the facilitators, indicating that they were acceptable in many different ways and contributed to the course.

The time and length of the programme was commented on in 9 of the 11 interviews. Three of those commented that they would have preferred longer sessions, specifically to allow for more group discussion time. The others reported that the time allocated was sufficient and that longer sessions would have made it difficult to concentrate. Of the 11 interviewees, 7 commented that having the course on a Saturday was most helpful.

Only one interview reflected concerns regarding transport and that this may make it difficult for others (though not the interviewee themselves) to attend the course. No other interviewees raised concerns regarding transport and five specifically commented that it was not an obstacle.

Autism Cares

Six interviews (60%) reflected on the programme content. While also commenting positively on it, three indicated they would have preferred additions or changes. These and further additions and changes will be discussed in more detail in the ‘Adaptation’ section. Regarding the written material given to parents, five interviewees reported that they found them helpful and easily accessible, but three reported having some difficulty with the written material. All three commented that they were able to access a dictionary or ask the facilitator when they were unable to understand.

Regarding transport, two parents commented that transport might be difficult for others. Four reported no difficulties with accessing transport to the venue. The length of the course came up in eight of the interviews. Two parents reported that the time of the course from 9 a.m. to 4 p.m. was too long, while three reported that the duration of sessions was acceptable to them. Six interviewees suggested that the course should be spread out over a longer period of time rather than on five consecutive days, and three of those reported they would have preferred there to be more space between the sessions to allow them to implement some of the information and skills they had learned. Parents were very positive about the facilitator. The facilitator’s experience, knowledge and practical expertise, in particular, were commented on as important areas that made her trustworthy and acceptable. No parents reported any concerns about the facilitator.

Theme 4: Language

EB/EBP

Six of the interviews (55%) raised language as a theme. Six of the parents commented that while their first language was not English, they preferred the course to be taught in English. As explained by two parents, translating from English to other languages (in this case Afrikaans) could result in formal language that would be hard to understand. The suggestion was that the facilitators should be able to explain any complex English words as necessary. Two of the interviewees suggested that there should be an interpreter during sessions.

Four interviewees (36%) commented that the videos had heavily accented speakers which made them difficult to understand. It was noted by all of those who commented on this that the facilitators were able to explain to the group what was being said. An example given by a parent confirmed UK versus South African English not to be an insurmountable barrier to understanding:

Ja, it’s fine, it was like, just sometimes they will go like, for a soda or a packet of crisps, but we all know that is like a cooldrink and a packet of chips. (PRN20)

Autism Cares

Four parents (40%) commented that the language of the course was problematic for their understanding. Three of them reflected that translation of the course materials would be helpful. As noted in the quote below, some parents did not think that the course should be translated as this might hinder their understanding:

I think that I would probably not understand that Afrikaans, even though my home language is Afrikaans. But I think I enjoyed it in the English. We don’t speak that high Afrikaans, I would say . . . for me, Afrikaans is a bit more difficult to understand, than what English is. (PRN27)

Okay, so you’re worried that if it was translated to Afrikaans, it wouldn’t. (Interviewer)

I’d get lost. (PRN27)

Theme 5: Support from the group

EB/EBP

A particularly strong theme from the interviews regarding acceptability was the role the group played in supporting parents. Nine of the interviews (82%) specifically commented on this raising it as a highly valuable part of the programme. The quote below reflects the impact that meeting others in similar positions can have in sharing information and reducing isolation:

For me it was just the understanding that there’s other people also going through that same thing and they could share with one another and that was an eye opener for us, especially for me. Look we were never exposed before to autism . . . for us it was a first time . . . it stood out for me. Just the sharing with one another. Each one’s going through different things and how we can learn from one another. (PRN09)

The interviews also revealed that parents in EB/EBP programmes started a WhatsApp group which they continued to use as a form of support.

Autism Cares

Eight of the interviewees (80%) commented on the benefit of meeting other parents in similar situations and gaining advice or support from them. One interviewee (the only male in the group) commented that he would have liked to have other fathers attend and that being the only male, he felt a little intimidated in sharing with the group. Three of the participants commented on joining a WhatsApp group with those in the group who lived close to them.

Adaptation

Parent satisfaction questionnaire

EB/EBP

In the parent satisfaction questionnaire, participants were asked to respond to the statement ‘how could the programme have been improved to help you more?’ The most common response (by 9/18 of the respondents) was that no adaptations were required. Where adaptation suggestions were made, a request for more sessions and more time in the sessions was an emerging theme (5/18). Other suggestions for changes included the need to make the video clips more understandable and there was a suggestion for a similar programme for children with ASD to help them ‘handle’ their ASD.

Autism Cares

Four of the respondents suggested that no changes were required, while two reported that they would have liked to have more time, that is, more days in the programme.

A number of other one-off recommendations were made. These included having a separate session for parents and specialists, having a downloadable ‘blueprint’ of the course on a website and having adults with ASD come in to speak to parents.

SSIs

EB/EBP

A number of adaptations were suggested by participants during the SSIs. In total, 46 comments regarding adaptations were made during the 11 interviews. These adaptations are summarised in Table 4 with the number of interviews in which they were reported.

Table 4.

EB/EBP and AC adaptations recommended in semi-structured interviews.

EB/EBP adaptations (reported by N =)	AC adaptations (reported by N =)
Update videos (8)	Home visit (7)
Change video language (3)	Run programme on weekends (3)
More group discussions (3)	Interpreter present during sessions (3)
More time in sessions (3)	More practical strategies (2)
Adapt parent book (3)	More group discussions (2)
On-going support/refresher course (3)	Aim at older children (2)
External speakers (e.g. Occupational Therapist) (2)	Include South African videos (1)
Provide list of ASD services/schools (1)	Less emotionally evocative videos (1)
Provide transport for parents (1)	Venue closer to home (1)
	More information on communication and behaviour (1)
	Practice with children (1)
	Course material to be available online (1)
	Specialists to give input/talks (1)
	Provide links to trustworthy websites (1)
	Suggestions for next steps after programme (1)
	Follow-up course (1)

EB/EBP: EarlyBird/EarlyBird Plus; AC: Autism Cares; ASD: autism spectrum disorder.

Autism Cares

A number of adaptations were suggested by participants during the SSIs. A total of 54 comments regarding adaptations were made during the 10 interviews. These adaptations are reported in Table 4 with the number of interviews in which they were mentioned.

Limited efficacy testing

Quantitative results

Efficacy testing focused on parental knowledge about ASD, parental stress and parental report of child changes, as measured by validated measures, and on parental perception of change in themselves and their children, as measured by the qualitative interviews.

On the Parent Involvement Questionnaire (PIQ) knowledge items (Solish & Perry, 2008), parental knowledge in both groups started at a high baseline (EB/EBP = 8/10, standard deviation (SD) = 1.81; Autism Cares = 8/10; SD = 2.87), increased somewhat on completion of the PET programmes (EB/EBP = 8.5/10, SD = 1.94; Autism Cares = 8/10, SD = 2.41) and increased to 3-month post-evaluation (EB/EBP = 9/10; SD = 2.1; Autism Cares = 8.5/10, SD = 1.77) (see Figure 3, panel a).

Figure 3.

Limited efficacy testing. Panel (a) shows changes in knowledge about ASD on the Parent Involvement Question, panel (b) shows changes on the Parenting Stress Index, and panel (c) shows parent-reported child changes on the Autism Treatment Evaluation Checklist.

On the Parenting Stress Index (PSI) (Abidin, 1995), the total parental stress index remained relatively unchanged in the Autism Cares group from pre- to 3-month follow-up, but showed a mean reduction of 14 percentile points in the EB/EBP group in the same time frame (Figure 3, panel b). The median pre-programme percentile scores were EB/EBP = 68 (SD = 16.36) and Autism Cares = 74 (SD = 20.67). The median post-programme scores were EB/EBP = 64 (SD = 25.76) and Autism Cares = 76 (SD = 8.25). The 3-month follow-up median scores were EB/EBP = 54 (SD = 14.62) and Autism Cares = 75 (SD = 12.29). Defensive scoring was noted in four of the participants for EB/EBP (one post-programme and three at 3-month follow-up) and one for Autism Cares (post-programme) and was not included. As described by Abidin (2012), there are different interpretations or working hypotheses for why a parent might receive a low score on the defensive scoring scale. He recommends that caution should be exercised when interpreting such results (Abidin, 2012). It was determined that for the purposes of this research excluding those who recorded such low scores would be preferable to including them as exhaustive exploration as to the reasons for their defensiveness was not logistically feasible.

Child changes on the ATEC (Rimland & Edelson, 1999) were relatively unchanged in the Autism Cares group, but improved by 20 points in the EB/EBP group from 79 at baseline to 59 by 3 months post-course (Figure 3, panel c). The median pre-programme total score for EB/EBP = 79 (SD = 28.2) and Autism Cares = 80 (SD = 23.09). The post-programme total score for EB/EBP = 71 (SD = 25.34) and Autism Cares = 81 (SD = 12.69). The 3-month follow-up median total score for EB/EBP = 59 (SD = 27.8) and Autism Cares = 77 (SD = 21.05).

There were missing data at the 3-month follow-up for five participants of EB/EBP and one for Autism Cares.

Multi-stakeholder panel consensus rating using the evaluation framework checklist

A total of nine multi-stakeholders participated in the consensus rating and included a child and adolescent psychiatrist, clinical psychologist, an educational psychologist, occupational therapist, two speech and language therapists and a school deputy principal. Stakeholders also included a non-governmental organisation (NGO) representative, a health systems researcher and an implementation science researcher. The data available to complete the evaluation framework checklist are presented in Supplementary Table 1. A comparison of the two PET consensus evaluations is shown in Supplementary Table 3.

Multi-stakeholder panel consensus

The consensus multi-stakeholder panel concluded that EB/EBP is a well-thought-out and carefully manualised programme that provides excellent structure to parents while delivering psychoeducation and support. There was reflection that some of the materials may require local adaptation and the difficulty and cost of training trainers was emphasised as a barrier. Autism Cares was described as a well-regarded local programme with good local information, although not as well-developed for parents from a content and structural perspective. The lack of manualisation and programme for training facilitators were regarded as restricting its scope for scalability, in particular. The panel indicated that based on the evidence provided including SSIs, questionnaires, and using the evaluation framework checklist as a guide, EB/EBP would be well-placed for further research.

Discussion

Despite the importance of PET in ASD, the literature on different PET programmes is relatively limited and highlighted that a wide range of outcome measures have been used to evaluate the highly variable range of programmes to date. Furthermore, most PET research has focused on efficacy testing, rather than on other aspects relevant to implementation of PET programmes. The majority of PET programmes have been examined in high-income and high-resource settings, and in the absence of any consensus evaluation framework to judge programmes for specific settings (Dawson-Squibb et al., 2020). In this study, we therefore set out to compare the feasibility of two ASD PET programmes in a low-resource LMIC setting, with a focus on acceptability, adaptation and limited efficacy testing. In addition, we used a recently generated evaluation framework checklist for a head-to-head comparison of these programmes.

The results from parents on both the EB/EBP and Autism Cares programmes showed strong acceptability support for these programmes. These results are largely in line with previous research on both EB/EBP and PET (Cutress & Muncer, 2014; Engwall & MacPherson, 2003; Palmer et al., 2020; Schultz et al., 2011). Parents suggested a range of potential adaptations reflective of the needs of multi-cultural settings, such as interpreters in sessions, creating videos with local parents and children and mixed thoughts about the need to translate materials into primary languages other than English. A range of other individual suggestions for adaptation was also identified and included longer and more sessions, separating parents and professionals and having information/materials accessible online. Our observations underscore the comments by Guler et al. (2018) who described the importance of context in relation to ASD early intervention programmes in South Africa, specifically commenting on language, culture and location of treatment, among other factors. As an example, the wide range of income distribution reported by the study participants is reflective of similar discrepancies in the population of the country and presents a unique challenge to those implementing PET and other interventions in South Africa, while no simple solutions exist ensuring that researchers are familiar with the socioeconomic and sociocultural differences prevalent in the country will be of assistance when considering participant responses and future implementation. Despite these observations, participants were overall very positive that the programmes met their needs in their current form and were relevant and appropriate in an LMIC context. The limited efficacy testing performed here showed some positive quantitative pre–post changes in parental knowledge, parental stress and child outcomes, more so in the EB/EBP than in the AC groups. We did not investigate family or community outcomes in this study.

One of the key findings from the multi-stakeholder evaluation framework generated for use in this study was the message that a ‘good’ PET programme needs to have more than just an outcome-focused evidence base. Apart from outcomes (for parents, children, families and the community) and processes/procedures (such as the time, duration, modalities) explored here, the implementation landscape also needs to be considered. For instance, EB/EBP has a highly manualised programme and an excellent trainer system, which are clear facilitators for dissemination and implementation. On the other hand, there is only one training centre for EB/EBP, based in the United Kingdom, with significant cost associated with training. Autism Cares has not yet been manualised, and there is currently only one trainer, with no system to train others. In addition, an intrinsic challenge for the Autism Cares course is that it is run over five consecutive days, in comparison with 1 day per week for EB/EBP. This may have influenced attendance (both parents largely attended EB/EBP which was not the case for AC) and could be a consideration for adaptation. While the evaluation framework checklist was not developed as a formal tool that requires psychometric evaluation, it nonetheless proved useful for evaluation in this study. However, further work to determine its usefulness in various settings may be of use.

A unique component of this study was to use a multi-stakeholder panel for a consensus comparison of the two PET programmes examined here. After weighing up all the programme information and mixed-methods data, EB/EBP were deemed by the multi-stakeholder panel to be more suitable for next-step research, given the combination of acceptability, accessibility, efficacy and implementation-related factors such as scalability and sustainability (Aarons et al., 2017; Milat et al., 2012).

If nothing else, the study highlighted the complexity of any comparative study of PET programmes or similar psychosocial interventions in real-life settings. Despite the importance of PET in ASD, there is clearly much further work required in the research community to generate consensus on key components for evaluation. This includes selecting suitable and widely usable outcome measures (qualitative and/or quantitative) and considering how to balance the needs of low-resource communities where feasibility studies such as this one may provide richer and more useful initial data prior to randomised controlled trials (Eldridge et al., 2016), while ensuring that there is a clear and strong evidence base – however defined – for a PET programme.

Limitations

We acknowledge a number of limitations to this study that may reduce the wider generalisation of its findings. First, sample sizes were small and therefore precluded any inferential statistical comparison. However, this allowed for a detailed mixed-methods approach which revealed very rich data, particularly in a culturally diverse setting where no such studies had been performed to date. Second, we used a mixture of standardised and qualitative parental self-report measures to evaluate outcomes, rather than to have performed any independent ‘objective’ examination of knowledge, change, stress and so on. As raised earlier, there are, however, no consensus measures for the range of potentially relevant outcomes. For that reason, we opted to use the mixed measures included here. In relation to the increase in knowledge scores, it is acknowledged that although the participant scores increased, they did so from a high base and consequently parental self-report may have reflected increased acceptance rather than actual knowledge improvement. The high baseline knowledge scores may also indicate that the questions on the instrument were too easy for this cohort. The selection of a different measurement tool with a more difficult set of questions may have allowed for any possible change in this area to have been captured. This was not a randomised study, and we did not have a control group. However, as a first feasibility step, this did not seem to be the priority. The mixed-methods quasi-experimental approach used revealed a range of challenges to consider for future studies. For logistical and practical reasons and as outlined in Supplementary Table 3, we did not have data available on all of the evaluation frameworks criteria. For this reason, a comprehensive comparison of the two programmes was not possible and is a limitation of the study. Despite this, we believe the comparison done has provided a useful indication of the programme strength and weaknesses. A limitation of this study was that the analysis of the data was done primarily by the first author. Although there was consultation with the co-author to prevent bias, this approach will have increased the potential for same. The purpose of this study was, to some extent, to mimic the ‘real-world’ problem faced by service providers and clinicians in selecting PET interventions. The two PET programmes under consideration were different in myriad ways (e.g. goals, duration, content and delivery) making direct comparison complicated. This is reflected in the ‘Results’ and ‘Discussion’ sections of the article. We acknowledge that given the multiple differences in the programmes, selecting one is very much dependent on the needs of the context and service provider. Further research is required to further distinguish the active ingredients of the programmes (e.g. duration, parents support, content).

Conclusion

There is clear global recognition of the value in PET for ASD. However, the evidence base for PET programmes has been limited to date, and no evaluation framework existed. In this study, we compared two very different PET programmes, one widely used internationally, but not in South Africa, the other developed in South Africa, but never previously evaluated. We examined the acceptability, adaptability and performed limited efficacy testing and identified strengths and weaknesses of both. Applying a recently generated ASD PET evaluation framework, a multi-stakeholder panel concluded that both programmes had important strengths, though particularly emphasised factors relating to processes and procedures and the implementation landscape which will impact their scalability and sustainability. Despite the limitations of this comparative feasibility study, it highlighted the need, and sets the scene, for further work on parent/carer education and training for autism spectrum disorder.

Supplemental Material

Comparative_feasibility_study_Supplementary_Table_1 – Supplemental material for A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting

Supplemental material, Comparative_feasibility_study_Supplementary_Table_1 for A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting by John-Joe Dawson-Squibb and Petrus J de Vries in Autism

Supplemental Material

Comparative_feasibility_study_Supplementary_Table_2 – Supplemental material for A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting

Supplemental material, Comparative_feasibility_study_Supplementary_Table_2 for A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting by John-Joe Dawson-Squibb and Petrus J de Vries in Autism

Supplemental Material

Comparative_feasibility_study_Supplementary_Table_3_(1) – Supplemental material for A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting

Supplemental material, Comparative_feasibility_study_Supplementary_Table_3_(1) for A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting by John-Joe Dawson-Squibb and Petrus J de Vries in Autism

Footnotes

Ethical approval

Ethics approval for the study was granted by the Human Research Ethics Committee in the Faculty of Health Sciences, University of Cape Town (HREC ref: 007/2016). The study was classified as minimum risk. All participants (families and multi-stakeholder participants) provided written, informed consent.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

John-Joe Dawson-Squibb

Supplemental material

Supplemental material for this article is available online.

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